Gluten free but still suffering: a look at non-responsive coeliac disease
For most people with coeliac disease, a gluten free diet is the current key to getting all the issues managed. It’s not a cure – but it is a way to control
However, switching to a gluten free diet isn’t always an immediate magic switch. In some people, symptoms will persist for a while. And in some people with definitively diagnosed coeliac, even when a gluten free diet has been adhered to, those tell-tale signs of coeliac – bloating, abnormal bowel habits – will stick around.
Testing for inflammation
Blood tests and gastroscopy are two of the key diagnostic tools used when investigating whether a person has active coeliac disease. The presence of increased coeliac antibodies suggests that gluten is causing ongoing inflammation – and these antibody levels eventually return to normal levels when maintaining a gluten free diet.
But this can take up to a year (or longer) – so even if you’ve been painstaking in your commitment to eliminating gluten from your diet, you can still face coeliac symptoms for a while.
Returning to form
While the antibody levels will eventually return to normal, it’s not the end of the story when it comes to facing facts about the impact that gluten has
had on your body prior to diagnosis. Small bowel biopsies, taken during a gastroscopy, provide a critical look at how the lining of the small bowel
Jason Tye Dyn is a consultant gastroenterologist in Melbourne, and carries out research relating to coeliac disease. He has shared his insights on the topic of non-responsive coeliac with the Australian Coeliac Society.
‘Healthy lining, appearing as finger like projections called villi, suggest adequately treated coeliac disease, whereas flattened and inflamed lining (villous atrophy) indicated ongoing active coeliac disease.’
In the past, it was thought that the affected bowel consistently returned to normal within a year of commencing a gluten free diet. However, Dr Tye Dyn has some more recent observations:
‘While this may be true in most children, in adults this happens in less than half of cases. It can take two or more years for the small bowel to show evidence of complete healing on an adequately strict gluten free diet.’
The result? Potentially ongoing coeliac symptoms while the bowel slowly heals.
Sneaky sources of gluten
Perhaps unsurprisingly, it’s gluten intake that is the most common cause of persistent symptoms – whether intentional or not. Unfortunately, the small bowel doesn’t differentiate between regular soy sauce and soy sauce that you were sure said gluten free on the label.
Similarly, some people may fall into the dangerous mindset of thinking that ‘a little bit can’t hurt’. Dr Tye Dyn has some bad news:
‘Unfortunately, as little as 50mg of gluten (1/100th of a slice of bread) over a period of time can cause damage. This inflammation is associated with several complications including osteoporosis and lymphoma.’
It’s also important to note that just because you don’t feel the effects of gluten consumption doesn’t mean that it isn’t secretly doing damage. ‘The only solution,’ Dr Tye Dyn says, ‘is strict avoidance of all dietary gluten.’
Being aware of other serious issues
There are a range of disease and conditions that can arise in those with coeliac disease who are religiously maintaining their gluten free diet. Some are specifically associated with coeliac disease: conditions like microscopic colitis, pancreatic insufficiency and refractory coeliac disease, all of which are serious and will require additional medical investigation and specialist treatment.
Inflammatory bowel disease (such as ulcerative colitis or Crohn’s disease), colorectal cancer and infection may all co-exist with coeliac disease, sharing some similar symptoms. A specialist will take all of these possibilities into account when assessing a patient with coeliac and persistent symptoms.
Dr Tye Dyn knows that specific symptoms can provide insights as to what the underlying issue could be. ‘Refractory coeliac disease may manifest as an unwell patient with significant diarrhoea, weight loss and abdominal pain, while microscopic colitis typically causes watery diarrhoea with minimal other symptoms. Bleeding from the bowel is not usually due to coeliac disease, but can be an important symptom of a serious underlying disorder such as colorectal cancer.’
Handling other discomfort and pain
There are other, less severe, conditions unrelated to coeliac that may seem similar in their uncomfortable manifestations – like irritable bowel syndrome (IBS). IBS flares are often set off by specific sugars known as FODMAPs – you may have heard of the low FODMAP diet, which is often recommended for those with IBS.
Taking up a gluten free diet always means making significant dietary changes – and sometimes this will mean more FODMAP-containing foods, creating the perfect setting for an IBS flare just when your coeliac symptoms are under control.
There are a range of reasons why things might not immediately clear up with a gluten free diet after your coeliac diagnosis – but they are all things that your doctor should be able to talk through with you, to get to the bottom of what’s going on, and make sure that you get fully on track to a great quality of life.
Jason Tye Dyn will be speaking at the Coeliac New Zealand conference on Saturday June 23 2018 – if you haven’t already got your tickets, book now at http://www.coeliac.org.nz/get-involved/agm-and-conference